Wegener's Granulomatosis - Symptoms

Not ready to share? Read other Patient Comments

What were the symptoms of your Wegner's granulomatosis?

Share your story with others:

MedicineNet appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.Patient Comments FAQs

Enter your Comment

Tell us a bit about your background to make your comments more useful to other MedicineNet users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to MedicineNet, you grant MedicineNet permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. MedicineNet will not pay you for your Submission. You represent that you have all rights necessary for MedicineNet to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the MedicineNet Terms and Conditions and the MedicineNet Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black square:

What are symptoms of Wegener's granulomatosis?

Symptoms of Wegener's granulomatosis are:

  • bloody sputum,
  • fevers,
  • fatigue,
  • joint pains,
  • shortness of breath,
  • sinus inflammation (sinusitis), and
  • weight loss.

Nasal ulcerations and even bloody nasal discharge can occur. Other areas of the body that can also become inflamed in patients with Wegener's granulomatosis include the eyes, the nerves (neuropathy), the middle ear (otitis media), and the skin resulting in skin nodules or ulcers.

Return to Granulomatosis with Polyangiitis (GPA or Wegener's Granulomatosis)

See what others are saying

Comment from: Piper, 65-74 Male (Patient) Published: March 12

In November 2007 I was diagnosed with Wegener's granulomatosis. I had gone to the Veterans Affairs hospital for a routine checkup, but I was feeling fatigued, short of breath, feverish and it hurt to walk. My doctor checked my blood work and said something wasn't right and sent me to the infectious disease center. They ran more tests and immediately checked me in to the hospital. After running various tests for a week, they determined that it was Wegener's. I initially lost about 50 lb. over a course of three weeks. I was put on a heavy dose of Cytoxan and prednisone for six months and gradually weaned of it. It affected my lungs and kidneys (now working at 40 percent). In 2008 I had open heart surgery and they were afraid of Wegener's, and it did flare up a week after surgery. I haven't had a relapse in over 5 years. The only medicine I'm on for Wegener's is lisinopril to help maintain kidney function.

Was this comment helpful?Yes
Comment from: wendy, 35-44 Female (Patient) Published: September 01

I am 44 years old and was diagnosed with Wegner's granulomatosis in August 2013 after the family doctor noticed nose caving in and crusting nose bleeds. So tests were run and sedimentation rate was 130 and C-reactive protein was in 40s but my ANCA was negative so I was sent to ENT for biopsies. He did tests which showed vasculitis and I was sent to rheumatologist and they said it was Wegener's granulomatosis. I was put on Cytoxan, Bactrim and prednisone. I also had severe anemia and very, very low iron, almost depleted by body of all iron, sleep apnea, etc. In May 2014 counts bottomed, so I had to go to hospital for fluids. I was feeling horrible so was off medications for a couple months then started methotrexate and prednisone thinking all was going good and remission, but late that year started having some breathing issues. In March I went to pulmonologist and he blew things off. I was wheezing every other breath and he said I had to lose weight and put me on another inhaler. I was upset as I couldn't do anything for no air. I just had a second opinion from another doctor who did some surgery and, oh my goodness, it feels so good to be able to breathe after months of not being able to. New ENT went down and took tissue, gave steroid shots and a balloon to help with swelling. I did great. I so hate this disease but still have negative ANCA and now just trying to deal with it and get things done.

Was this comment helpful?Yes


Get the latest health and medical information delivered direct to your inbox!